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Evidence-Based Review and Discussion Points

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Abstract

Enhancing communication between family members and health care team members within the pediatric intensive care unit (PICU) is a national clinical and research priority. Poor communication can increase patients’ length of stay, hospital costs, and the likelihood of delivering value-discordant care. Family members of PICU patients report numerous communication barriers, such as poor access to members of the health care team, inadequate care coordination, and infrequent clinician-initiated discussions. Despite these rec-ognized barriers, there is a salient lack of interventions to support communication between PICU family members and members of the health care team.To address this issue, the investigators studied the feasibility of implementing a navigator-based communication intervention called PICU Supports and assessed the responses of family members and clinicians to that intervention. PICU Supports comprises specific intervention components for the navigator, patients’ family members, and health care providers. The navigator’s intervention components included a rigorous navigator- training protocol; a standardized meeting-frequency protocol for the navigators, the family members, and the health care team members; tailored PICU-transition support for the family members; and a post-PICU discharge check-in. Family members’ intervention components included a parent-developed PICU information handbook, a bedside communication log, and bereavement packets for family members of decedents. Each week, members of the health care team reviewed a navigator-prepared document that included relevant psychosocial information and identified family needs. The investigators conducted this study at a university-based, tertiary-care children’s hospital with 76 PICU beds.Family members completed the same survey at enrollment, discharge, and 3 to 5 weeks after discharge. Some family members participated in an optional 1-on-1 semistructured audio interview at discharge. Thirty-five family members enrolled in the study. Family members reported that PICU Supports improved communication with members of the health care team, although no family members requested a family meeting. Opinions on the PICU handbook were mixed, as some family members were too overwhelmed to read the material. Family members and health care team members rarely used the bedside communication log. Overall, the health care team members found PICU Supports to be valuable, but they recommended improving the navigator’s integration with members of the health care team. The investigators concluded that PICU Supports was feasible to implement and research and that further refinement and testing of the intervention are warranted.Kelly N. Michelson, MD, MPH, lead author of the study, cites her prior research and personal clinical experiences as the motivation for the study. Originally, Dr Michelson had planned to develop a standardized approach to address end-of-life decision-making in the PICU. However, her preliminary work “highlighted the individual nuances and contextual issues that often influence decision-making” in the PICU. So rather than creating a standardized intervention, Dr Michelson concluded that critical care providers may benefit from “a malleable approach to decision-making that can easily be adapted to the individual needs of each family, patient, and situation.” She adds, “given the successful implementation of navigators in other settings, introducing a navigator into the PICU setting to individualize decision-making and psychosocial supports seems like the next natural step.”To assemble the team necessary to develop PICU Supports, Dr Michelson used “stakeholder-engaged comparative effectiveness research” as a guiding framework. “We identified 3 groups of stakeholders: parents of previously critically ill children, clinicians who care for and administrators who oversee the care of critically ill children, and clinical trials research experts.” The clinician stakeholder group included representatives from various medical specialties, nursing, social work, palliative care, spiritual care, and administration. Together, these 3 stakeholder groups developed the PICU Supports intervention and helped design the study.Dr Michelson contends that the “value of having such a large, multifaceted group is reflected in the comprehensive nature of the PICU Supports intervention,” and encourages “investigators to make that extra effort to engage” multidisciplinary groups during research. However, she admits that “coordinating such a large group presented some challenges.” Dr Michelson recalls difficulty scheduling meetings and “finding ways to keep the larger team engaged when there were no direct activities for them to comment on or participate in.” Nevertheless, she concludes: “I feel incredibly privileged to have had the opportunity to work with such a diverse and dedicated group of people.”Dr Michelson believes that although “we are still trying to determine the best way to support parents and families of critically ill children … the best approaches will ultimately require a team effort,” as many disciplines and professions influence the family experience within the PICU. She anticipates that “this work will help pediatric critical care teams develop strategies for bringing those group efforts together.” Dr Michelson humbly acknowledges that PICU Supports is “only one approach” that can be used to support families and clinicians and “the impact of this approach is still yet to be determined. But the idea that we need to find better, more efficient ways to individualize care for families, knowing the complexity of the care team and clinical challenges facing those in the PICU, is fundamental.”As clinicians and scientists conduct more research, prominent questions may arise. For example, Dr Michelson shares, “we were surprised to see so few parents interested in having family meetings because many experts tout their value.” She further acknowledges that research within the PICU can be difficult because “it serves a very heterogeneous population with different support needs.” As such, studies may focus on “very specific populations,” which “limits generalizability.” Alternatively, investigators may “create an option that could be adapted to different populations to maximize generalizability and scalability…. Perhaps, the best approach lies somewhere between those two extremes.”This feature briefly describes the personal journey and background story of the EBR article’s investigators, discussing the circumstances that led them to undertake the line of inquiry represented in the research article featured in this issue.Kelly N. Michelson, MD, MPH, has been a pediatric critical care specialist for more than 15 years. However, another of her life’s passions is dance: “Dancing and the human body were always my passions.” In fact, she focused on dance between completing her undergraduate degree and entering medical school. “My dance career allowed me to travel nationally and internationally and to fulfill one of my childhood dreams. But I never let go of my dream to become a physician.”During her pediatric and critical care training, Dr Michelson “was drawn to the interesting pathophysiology and fast pace in the PICU.” She “was also amazed by the intense relationships that clinicians develop with parents of critically ill patients … [who are] facing their worst nightmare.” She says that these formative experiences “drove me to do the research that I do now.” Even today, Dr Michelson’s experiences as a pediatric intensivist remain central: “[they] shape how I think about supporting families of critically ill children and about the questions I try to address in my research.”

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